|My current library|
There are tent-pole events in the progression of dementia, points of significance where a non-trivial part of you is lost for good. Each of us attaches an importance to these events that is both unique and personal. For example if I awoke one day realizing I could no longer sing an opera, that would be a shruggable event at best because I never could before. It's like that old vaudeville joke about "Doctor! Doctor! Will I be able to play violin after the operation? Sure says the doc...Great! I never could before!" Boom-tish.
On the other hand when the loss represents an important and seemingly vital part of your life, the loss can bring grief no different than the loss of a beloved friend.
For me, that loss was the total and complete ability to read books and that hit me hard. Growing up in the wilds of the Ice Planet Hoth (aka rural Michigan) there were no other kids around, we barely had dirt roads and I didn't have indoor plumbing until I was six or so. And let me assure you, a wooden out-house on the Ice Planet Hoth (or Michigan in February) is no place to get caught with your pants down.
|Jeff Cobb going to school, age 14|
I had no siblings and so was left to entertain myself and so I found books. Books got to be my window to the world outside of miserable-assed rural Michigan of the 1960's. They taught me to read, to compose, to converse. I never realized how weird that made me until I entered public school for the first time and was able to read whole chapters of history books aloud to the class while they were struggling with verbs. it was simply all I knew. A side-effect if this learning was a good portion of what I read were the classics from Victor Hugo to Robert Louis Stephenson and I learned to talk from those...which lead me to walking into school talking like someone from the 1800s. Hell I didn't know any better.
All through growing up I haunted our public library because I realized something important: School was boring as shit and I could learn the stuff I really wanted to know in the library, everything from how to pick locks like Harry Houdini to how to make an arc furnace in your basement. That last one should have been filed in the "Property Damage" section, the Dewey Decimal System be damned.
Books taught me magic so I could be a stage magician until I was 18. And at 18 I had the Blinding Flash of the Obvious most guys did at that age in rural Michigan: GTFO. Many people are born with the urge to travel. Many from Michigan are simply born with the more fundamental urge to move. I had to get out and see the world.
I did just that, getting all over the US and around as much of the world as I could thanks to the Army but no matter where I went, who I was with or what I was sent to do, I always had a cache of books with me. Then in the 80's in Berlin the home PC craze was catching on. That was incorrect; it was catching on everyplace else in the world; Berlin of the 80's was barely not Berlin of the 60's, not to mention still being stuck being a wall and 300 or so kilometers of "the bad guys" between me and the rest of the civilized world. Yet the computer thing bit me hard, I was already doing electronics work for the Army at the time and so computer engineering was a next logical step for me. No colleges taught what I need to learn, besides I was still in the Army and could not attend if I wanted to.
So books. I got my hands on every English book on engineering, programming and more, devoured it all and continued this after I got out until I had learned enough and was able to compete with university-trained engineers. And books helped me beat them too, because the universities could never teach anything useful in business because the computer/business world moved too fast and the graduates didn't have the skills needed...but I did because I could read and apply what I read quickly. Books kept me at the head of my game the whole time until the Lewy Body Dementia struck.
Since that time, I have used my book reading as a kind of scale or way to gauge how my progression is...progressing.
It has been like this:
5 years ago I could and did read everything from dense technical manuals to fantasy, science fiction, political thrillers and classic horror novels like Stephen King, etc. More than that though I felt incredibly wealthy, rich even. Yes at the top of my game I made good money but thats not what I am speaking of. When I was a small child and had few books, my dreams of being "rich" meant I could buy and have all the books I could ever want or read. Like a nerds version of the Las Vegas fantasy I guess. In any event, through my professional and otherwise contacts I came into possession of a life's dream for me: a collection of nearly 40,000 ebooks, everything from the classics to the modern stuff and non-fiction, all in nice EPUB (common ebook standard) format. Whole thing could fit on a single USB stick, I could (and nerdly, did) carry it around with me for years, finally having my own, monster library of books I could read anytime I liked. I really felt like Bill Gates or something, wealth-wise because of that. Its like I had accomplished something I dreamed of as a kid....how many can actually say that?
3 years ago, I could no longer read technical books, programming books, even user guides for products. I could still and often did read lots of things I had read in the past and so knew well like the works of Isaac Asimov and Arthur C Clarke. In addition, I have been a lifelong comic book, graphic novel and since working for Sony, a Manga (Japanese comic or graphic novel) fan as well. I particularly loved that latter stuff because it was like discovering a whole new universe of fables and myths I knew nothing of...Disney gets boring after 50 years.
So I still felt like reading was an option, a companion for me...even though I could not read or understand new books, I had forgotten enough of the old ones to keep them fresh....I still felt like "me".
Maybe 6 months ago I realized I could no longer read and absorb any of my older novels I knew well...my brain could simply no longer chew its way thru any plot and retain anything long enough to finish a book. I settled more into my Spiderman, Batman, Bleach and TekkinKinkreet graphic stuff.....
So yesterday...well as you may know I do alot of little dumb graphic things with a photo tool for Linux called the GIMP...and I saw on my Amazon feed I could get a book with 40 simple GIMP tricks for beginners, figuring I might find a jewel or two there....I get the book, open to page one...and close it with a knot in my stomach. I could tell there was no chance to reading a chapter let alone the whole thing.
As I then gazed about my room where I had a lifetime of books stored and realized that I was now surrounded by strangers. Books that had been a source of wisdom and enlightenment to me were now little more than opaque objects, devoid of meaning or use.
I sat up thinking on this for a long time last night and simply cannot see a way to get something that has given me so much, that has meant so much to me, that has been a comfort when nothing else was...to get this back.
They are simply gone now, to never be a part of my life again. I feel like an obituary is in order or something, but what do I know, I am crazy.
Now my shelf is empty and my life revolves around even fewer things to anchor me here.....
I will miss my books, even though they are starkly alien and more than a little foreboding to me right now....
Anyone need a good used bookshelf?
Edit: I think I just realized why this hurts me so. Books have also been the primary source of my learning things in this life, and if I can no longer absorb them now, I can no longer view them as sources of learning. I have always loved learning and pursued it with a passion. Maybe that makes me strange(r) but its true, I love learning new things, always have. Now thats gone for this lifetime and I think I am facing the end of my learning as well...
Edit 2: While my post is only a day or so old, the facts are this bookless existence has had a few days to sink in...for me to get used to life without books. Well it is been a few days and I think it really does point out what a part of my life books were. Right now, I find myself with almost nothing to do during the day or evening until sleep. For the past 50-odd years these hours were taken up with reading of some sort, for work or pleasure. Now its gone and suddenly...its like being handed a daily schedule to do list with only one or two things on it. Ten minutes later you are done so now what? Its like that when I do the apparently only one or two non-reading things in my day. I suddenly have skads of time on my hands I don't know what to do with...thats not right. Not "suddenly"; its been happening over time. I think once that time finally shrank to zero, it brought it all into focus making it feel worse I suppose.
But I definitely have a lot more time in my day. I guess thats another usable scale to use: when you finally reach the point where your daily "to do list" is consistently zero, thats it buddy. End of the road.
Houston, we have a problem: Houseplant status has been achieved.